2007 The Minimum Data Set - Recommendations to Help States

8/7/2019 2007 The Minimum Data Set - Recommendations to Help States

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Community Living Exchange

June 2007 Discussion Paper

Funded by Centers for Medicare & Medicaid Services (CMS)

The Minimum Data Set:

Recommendations to Help States

Better Support Nursing Home

Residents Who Seek Community Livin

Susan C. Reinhar

Leslie Hendrickso


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Susan C. Reinhard & Marlene A. Walsh

Robert Mollica

Rutgers Center for State Health Policy55 Commercial Avenue, 3rd FloorNew Brunswick, NJ 08901-1340Voice: 732-932-3105 - Fax: 732-932-0069Website: www.cshp.rutgers.edu/cle

Tis document was developed under Grant No. 11-P-92015/2-01 from the U.S. Department of Health

and Human Services, Centers for Medicare & Medicaid Services. However, these contents do

not necessarily represent the policy of the U.S. Department of Health and Human Services, and

you should not assume endorsement by the Federal government. Please include this disclaimer

whenever copying or using all or any of this document in dissemination activities.

We collaborate with multiple technical assistance partners, includingILRU, Muskie School of Public Service, National Disability Institute,

Auerbach Consulting Inc., and many others around the nation.

Te Community Living Exchange at Rutgers/NASHP provides technicalassistance to the Real Choice Systems Change grantees funded by theCenters for Medicare & Medicaid Services.

Tis document was prepared by Susan C. Reinhard of the Rutgers Center for StateHealth Policy (CSHP) and Leslie Hendrickson of Hendrickson Consulting, Inc.For more information, contact Leslie Hendrickson at [email protected] by phone at 732-932-3105.

Prepared for:


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Table of Contents

SUMMARY................................................................................................................................................... 3

MAJOR POINTS ........................................................................................................................................... 3BACKGROUND........................................................................................................................................... 4

THE FEDERAL POLICY BACKGROUND EMPHASIZES CHOICE IN LONG-TERM CARE SERVICES.................... 4WHAT IS THE MDS?................................................................................................................................... 5IS THE MDSUSED OPTIMALLY TO SUPPORT THE NEW FREEDOM INITIATIVE? .......................................... 7THE ISOLATION OF SECTION Q ................................................................................................................... 7ANSWERS TO SECTION QITEMS ................................................................................................................. 7DIFFICULTIES IN USING THE ANSWERS....................................................................................................... 8

THE OPPORTUNITIES FOR IMPROVEMENT .................................................................................... 9

ADDING A 19TH

RAP FOR DISCHARGE PLANNING...................................................................... 9

WHAT IS THE EXPECTATION OF CMS REGARDING DISCHARGE PLANNING?............................................... 9WHAT IS A RAP?...................................................................................................................................... 10WHY SHOULD CMSCREATE A 19THRAP?............................................................................................... 11CREATING A RAP..................................................................................................................................... 11

CHANGING THE MDS 2.0 USER MANUAL........................................................................................ 12

CHANGING THE WORDING OF EXISTING SECTION Q ITEMS IN THE MDS......................... 14

IMPROVEMENTS TO ITEM Q1A .................................................................................................................. 14IMPROVEMENTS TO ITEM Q1B .................................................................................................................. 15IMPROVEMENTS TO ITEM Q1C .................................................................................................................. 15ADDING A FOURTH ITEM TO SECTION Q................................................................................................... 16

ADDING SECTION Q TO THE QUARTERLY ASSESSMENT FORM............................................ 16

CONCLUSIONS......................................................................................................................................... 17ACKNOWLEDGMENTS.......................................................................................................................... 17

APPENDIX A: PREFERENCE ITEMS IN MDS VERSION 3.0 AND STRIVE................................. 18

APPENDIX B: CALIFORNIA FOLLOW-UP TO RESIDENT PREFERENCE ANSWERS............ 20

REFERENCES ........................................................................................................................................... 28


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June 2007

Discussion Paper

The Minimum Data Set: Recommendations to Help States BetterSupport Nursing Home Residents Who Seek Community Living

Susan C. Reinhard and Leslie Hendrickson

Summary

This Discussion Paper summarizes the background and recommendations forpotential changes to make the Minimum Data Set (MDS) and related policies andpractices more useful to states for identifying and supporting nursing home residents whowish to return to their homes and communities. Section Q of the MDS has, for someyears, been discussed at state and national conferences, training sessions, on conferencecalls, during technical assistance visits, and in talks among state Medicaid staff. Forexample, Rutgers Center for State Health Policy has worked on this since 2002 and haspublished two reports that discussed Section Q.1

Based on the authors synthesis of these discussions, this Discussion Paper linksthe momentous changes of the New Freedom Initiative policies with the need to upgradeor modernize the MDS to better reflect these policies. Four opportunities forimprovements are recommended to improve discharge planning in the countrys 15,885nursing homes.2

Major Points

Following the Olmstead decision, massive and far-reaching federal policyinitiatives attempt to provide more choice, dignity and independence for personswith disabilities. One clear goal of these policies is to help such persons live andwork in the community outside of institutions.

Section Q of the MDS is not supportive to states implementing transitionprograms. Section Q does not support persons who express a preference to leaveinstitutions. For example, the lack of monitoring of institutional reactions topatients Section Q responses is perceived to be a serious weakness in theassessment of resident need and resident choice of long-term care services. The

1 Reinhard S., Hendrickson L., & Bemis A. (2005, February) and Reinhard S. & Hendrickson L. (2006,June).2 American Health Care Association. (2006, December), OSCAR data for December 2006. Retrieved onMarch 19, 2007 from http://www.ahca.org/research/oscar/rpt_control_200612.pdf


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fact that a resident might wish to leave the nursing home is not considered apriority in the operation and oversight of institutions.

Section Q is one of the few sections in the MDS manual whose answers are notused in a RAP. Adding a 19

thRAP is seen by states and advocacy organizations

as critical to support CMS New Freedom Initiative policies.

The Section Q instructions in the MDS Users Manual are viewed by states andadvocacy organizations as paternalistic and inconsistent with CMS NFI policies.The wording should be reviewed and revised to create an expectation for anobjective assessment of resident preferences and eliminate the suggestion to pre-judge the residents ability to successfully transition.

Persons discussing Section Q items often cite difficulties with the current wordingof the items and suggest the rewriting, elimination, or adding of items. Thesedifficulties and suggestions are discussed at length below.

Adding Section Q to the MDS Quarterly Assessment would be useful given statesefforts to obtain timely information on residents preferences.

Background

Section Q items in the Minimum Data Set (MDS) have been extensivelydiscussed by state Medicaid staff, consumer advocates seeking to help persons leavenursing homes, and federal staff of the Centers for Medicare & Medicaid Services(CMS). For example, Section Q has been discussed at conferences such as the annualconferences of Home and Community Based Services, Rutgers/NASHP learningcollaborative meetings with CMS grantees,3 and CMS New Freedom Initiative

conferences. Discussions of Section Q are often imbedded in discussions of nursing hometransition programs,4 resident assessments, and discharge planning. But these discussionsalso occur in the context of massive and significant federal policy initiatives and statesefforts to accomplish these initiatives.

The Federal Policy Background Emphasizes Choice in Long-Term Care Services

The 1999 Olmstead vs. L.C. and C.W. decision facilitated a landmark change inFederal long-term care policy.5 The New Freedom Initiative (NFI) was announced byPresident George Bush on February 1, 2001 and followed up by Executive Order 13217on June 18, 2001. Congress supported this major policy change by authorizing the Real

Choice System Change program which, since its inception in FY2001, has awarded 314grants totaling over $280 million to all fifty States, the District of Columbia, and twoterritories. Thirty-one Money Follows the Person grant awards issued by CMS in 2007

3 The Rutgers/NASHP technical assistance team has held a series of MFP Systems Design Collaborativesin New Jersey, Washington, Texas, and California; participant discussion on the MDS at each of theseforums is incorporated in this discussion paper.4 Centers for Medicare & Medicaid Services, (2006, July).5 The Supreme Court text of the decision can be found at http://supct.law.cornell.edu/supct/html/98-536.ZS.html and an overview of the background of the June 22, 1999 Supreme Court decision can befound at http://www.accessiblesociety.org/topics/ada/olmsteadoverview.htm


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will support the transitions of more than 37,000 people back to their homes andcommunities. Additionally, in collaboration with the Administration on Aging (AoA),CMS has awarded 43 Aging and Disability Resource Center grants of up to $800,000each to help States develop one-stop shopping centers for seniors and people withdisabilities who need long-term care information.6 CMS has also sponsored Direct

Service Worker grants, Medicaid Infrastructure grants and the Demonstration to MaintainIndependence in Employment.

The momentum built by these continuing, intensive federal policy changes isshown in the waivers--139 of section 1915(c) and 8 Independence Plus--that wereapproved by CMS in FFY 2006.7

The Deficit Reduction Act of 2005 (P.L. 109-171), hereafter DRA, was passed inFebruary 2006 and added to the momentum created by earlier New Freedom Initiativeactions. While the most attention has been focused on the $1.7 billion authorized inSection 6071 of the DRA, the DRA had nineteen provisions in Title VI impacting the

work of CMSs Elderly and Disabled Health Programs Group.

What is the MDS?

The MDS is part of the federally-mandated Resident Assessment Instrument(RAI) which is the statutory name of the instrument that includes the MDS, ResidentAssessment Protocols (RAPs), and the utilization guidelines. The MDS forms andmanuals that detail the resident assessment process can be found and downloaded at theCMS website.8 The MDS is the only national database collected on individual nursinghome residents. By law, all residents in Medicare and/or Medicaid certified nursinghomes must be assessed according to this prescribed process. CMS collects about ten

million MDS records annually

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on the approximately three million persons who usenursing homes each year.10

The standardized clinical information about residents, the national uniformcollection methods, data availability, and its use in Medicares skilled nursing facilityprospective payment system (SNF PPS) and state case mix payment systems, have madethe MDS a valuable source of information. Access to state and national level informationfrom the MDS database is obtained through Data Use Agreements (DUAs). As of March2006, there were 262 active DUAs for using MDS data.

Section Q of the MDS, one of its 18 sections, deals with Discharge Potential andOverall Status of the Resident, and has a potential use in identifying residents who might

6 CMS supported New Freedom Initiatives with three state Medicaid letters published on August 13, 2002,September 17, 2003), and August 17, 2004. The CMS state Medicaid director letters can be found athttp://www.cms.hhs.gov/SMDL/SMD/list.asp7 See the CMS DEHPG FFY 2006 Annual Report athttp://www.cms.hhs.gov/NewFreedomInitiative/Downloads/DEHPG%20FY2006%20Annual%20Report.pdf8http://www.cms.hhs.gov/NursingHomeQualityInits/20_NHQIMDS20.asp#TopOfPage9 Mor, V, (2004).10 Tucker, A.M. & Decker, F.H. (2004).


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wish to leave the nursing home and live in the community.11 Other sections of the MDSare also useful in providing information relevant to discharge planning, however onlySection Q has three items to gauge discharge potential. The current wording of theseitems is shown below.

SECTION Q -- DISCHARGE POTENTIAL AND OVERALL STATUS

These Section Q questions implement federal regulations at 42 CFR 483.20 (b),which require the states Resident Assessment Instrument to include an assessment ofdischarge potential, and 42 CFR 483.20(k)(3)(ii)(1)(3) that requires, A post-dischargeplan of care that is developed with the participation of the resident and his or her family,which will assist the resident to adjust to his or her new living environment.12 OtherFederal regulations at 42 CFR 483.12 discuss discharge planning from the standpoint of aresidents rights should a nursing home wish to discharge a person. The language in 42CFR 483.12 and 42 CFR 483.20 does not require a nursing facility to interview residents,determine their preferences, and actively help them to leave the home. The languageneither describes nor proscribes what effective discharge planning is.

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11 Illinois House of Representatives (2004, January) provides an example of this use of Section Q.12 See federal regulations at CFR 482.43 for hospital requirements for discharge planning.13 While this brief focuses on discharges to the community, planning regarding discharges to hospitals alsoneeds to be improved since studies show hospitalizations of nursing home residents are frequentlyavoidable. See Gillick, M. & Steel, K. (1983); Gabow, P. et al. (1985); Saliba, D. et al. (2000); Intrator, O.,Zinn, J. & Mor, V. (2004).

a. Resident expresses/indicates preference to return to the community

0.No 1.Yes

b. Resident has a support person who is positive towards discharge

0.No 1.Yes

1. DISCHARGEPOTENTIAL

c. Stay projected to be of a short duration-discharge projected within90 days (do not include expected discharge due to death)

0.No 2.Withing 31-90 days

1.Within 30 days 3.Discharge status uncertain

2. OVERALLCHANGE INCARE NEEDS

Residents overall self sufficiency has changed significantly ascompared to status of 90 days ago (or since last assessment if less than90 days)

0.No change 1.Improved-receives fewer 2.Deteriorated-receivessupports, needs less more supportrestrictive care


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Is the MDS Used Optimally to Support the New Freedom Initiative?

The single most consistent policy comment made by state staff about the MDS isthat its Section Q, which deals with discharge planning, is not in step with CMSs New

Freedom Initiative. Leslie Norwalk, the acting administrator of CMS in March, succinctlycaptured the essence of Olmstead and current CMS policy when she said:

People want and deserve this freedom to choose care in the community. Weknow that when we give beneficiaries and their caregivers these opportunities, weget higher beneficiary satisfaction and better outcomes.14

As currently designed, Section Q does not facilitate choice, dignity, andindependence of nursing home residents. States and non-profit organizations attempt touse Section Q to help persons have a choice of long-term care services, but find it oflimited utility given the current structure of the questions.

The Isolation of Section Q

Within the MDS, Section Q is isolated. Section Q is one of the few sections in theMDS manual whose answers are not used in a RAP. Elements from Sections B throughP are utilized in a RAP, but no elements from Q are used. Section Q is not used in any ofthe quality measures and quality indicators (QM/QIs) developed for use by CMS to guideinstitutional oversight surveys and for publication in Nursing Home Compare.Nursing Home Compare is a website run by CMS to educate consumers about theirchoice of long-term care facilities.15 Section Q is not used in any of the resourceutilization groups (RUGs) used to establish case mix payments for nursing homes.

Finally, the section is not used in quarterly assessments. Section Q has the appearance ofbeing an isolated section that is tacked on to the bottom of the assessment following theother sections.

Answers to Section Q Items

What do the Section Q items tell us?

The CMS MDS Active Resident Information Report for the Third Quarter 2006shows that about 21% of the MDSs of residents nationally had a yes answer to itemQ1a., Resident expresses/indicates preference to return to the community.16

14 Norwalk, L. (2007, March). Seehttp://www.cms.hhs.gov/apps/media/press/speech.asp?Counter=2084&intNumPerPage=10&checkDate=&checkKey=&srchType=&numDays=3500&srchOpt=0&srchData=&keywordType=All&chkNewsType=11&intPage=&showAll=&pYear=&year=&desc=&cboOrder=date15 Seehttp://www.medicare.gov/NHCompare/Include/DataSection/Questions/SearchCriteria.asp?version=default&browser=IE%7C6%7CWinXP&language=English&defaultstatus=0&pagelist=Home&CookiesEnabledStatus=True16 Some state staff have expressed a concern with the CMS website information. The concern is thatmissing data are coded along with the no answers. However, the CMS website for Section Q reporting


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About 17% of the MDS assessments reported the resident has a support person who ispositive toward the discharge in response to Q1b.17 For examples of similar state statisticssee Ohio

18and Alabama.

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Difficulties in Using the Answers

States have difficulty using Section Q answers in a timely way. A frequently

heard comment is that state managers are generally dissatisfied with the length of time ittakes to get Section Q information from its database to transition workers. By the time theinformation gets to transition workers in nursing homes, the persons are no longer there,have lost key supports that would have been critical to successful transition, have

experienced some adverse event, or have changed their mind. One state, Pennsylvania,has innovatively addressed this problem with a computer system called the Front DoorInformation System in which answers to Section Q items are transmitted to local agenciesevery two weeks.20 An effective current use of Section Q is in the facility when the

authorized Medicaid transition worker reads the MDS record to learn about potential

Medicaid residents who can be helped to transition.

Despite these difficulties, advocates have urged states to use Section Q as a wayof improving their discharge planning. The awareness of Section Q data has been spreadamong advocates in the aging and disability communities. The use of the internet hasmeant that one person or a small organization can develop sizeable mailing lists and senda mailing with the number of persons in each state that answered yes to Section Qquestions.

21Staff members in independent living councils are aware of Section Q. Two

out of ten councils sponsoring nursing home transition program used Section Q in theirwork; others were aware of it but did not use it.22

A new version of the MDS is currently under development. CMS has a websitewhere information regarding the status of this project can be found.23 Appendix A shows

indicates that this is not the case. Seehttp://www.cms.hhs.gov/MDSPubQIandResRep/downloads/rdescript.pdf17http://www.cms.hhs.gov/MDSPubQIandResRep/18 Ohio Department of Job and Family Services, Bureau of Long Term Care Facilities, Case Mix Section,(date unknown), p. 99.19 UAB Center for Aging, (2004, April 19), p. 31.20 The FDIS was created with the help of the states nursing home reimbursement contractor who hasaccess to the server containing MDS data. This solution to timely MDS access can be used by any of theother states that contract with the same national vendor. Pennsylvania also collects information on persons

who are being transitioned and stores this in its OMNIA database.21 For an example, see Steve Golds website http://www.stevegoldada.com22 Reinhard S. & Hendrickson L. (June 2006), p. 9. See also Davis v. CHHS C00-2532-SBA , (2003December 12) Settlement Agreement Between Plaintiffs And Defendant City And County Of SanFrancisco, Section Q answers were used in a 2003 San Francisco case, Davis v. CHHS, C00-2532-SBA.The settlement agreement between the plaintiffs and the City and County of San Francisco required the cityto set up a targeted case management program to do active discharge planning. The agreement stipulatedthat the plaintiffs would receive the first transition services and everyone who was identified in theMDS Section Q as having expressed a desire for discharge would be one of the groups who were next inpriority to receive discharge services.23 Center for Medicare & Medicaid Services,http://www.cms.hhs.gov/NursingHomeQualityInits/25_NHQIMDS30.asp#TopOfPage


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the discharge item in the July 2006 Draft of MDS 3.0.CMS has been testing additionaldischarge-related items as part of its Staff Time and Resource Intensity Verification(STRIVE) study to refine the Medicare SNF payment system, RUG-III. Appendix A alsoshows the discharge items CMS is testing in the STRIVE study. The study is in progressin 240 facilities in 15 states and initial inter-rater reliability scores show some discharge

items have lower than desirable scores. While it is positive that CMS is exploringalternative wording of section Q items, it is not clear whether other key components ofMDS implementation (RAI manual, RAP, etc) are under consideration.

The Opportunities for Improvement

Four potential improvements are recurrently discussed among State Medicaid Agencystaff and other stakeholders involved in transition programs. If enacted, theseimprovements will help CMS place a higher priority on transition programs and theaccompanying necessary discharge planning, improve discharge planning in the nations

nursing homes, and align the MDS with the New Freedom Initiative policies. Theimprovements are:

Adding a 19th RAP for Discharge Planning that aids residents who express apreference for home or community based long-term care services

Changing the MDS 2.0 User Manual

Changing the wording of existing Section Q items in the MDS

Adding Section Q to the Quarterly Assessment Form

Adding a 19th

RAP for Discharge Planning

What is the Expectation of CMS regarding Discharge Planning?

What does CMS expect an institution and the state to do in response to yesanswers to Section Q? There is a prevailing view among the home and community-basedcommunity that the lack of follow-up and accountability for Section Q answers is aserious weakness in the MDS assessment and does not facilitate transition and dischargeplanning. The missing link is that no one is accountable for action based on the residentsresponse to Section Q and their preferences. The lack of accountability begs the questionof Why bother asking the questions if you do not do anything with the data?

Observers have periodically suggested that CMS establish a 19

th

RAP forDischarge Planning in order to ensure a follow-up. There are currently 18 ResidentAssessment Protocols (RAPs) as shown below.


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Table 1: Current Resident Assessment Protocols

Resident Assessment Protocols

Delirium

Cognitive Loss / Dementia

Visual FunctionCommunication

Activities of Daily Living

Urinary Incontinence

Psychosocial Well Being

Mood State

Behavioral Symptoms

Activities

Falls

Nutritional Status

Feeding Tubes

Dehydration / Fluid ManagementDental Care

Pressure Ulcers

Psychotropic Drug Use

Physical Restraints

What is a RAP?

A RAP is a resident assessment protocol. The main intent of the residentassessment process is to develop an individualized plan of care based on the identifiedneeds, strengths and preferences of the nursing home resident. The current RAP formathas three main parts and a summary review. The three parts are The Problem, TheTriggers, and The Guidelines.

The Problem part defines the subject and describes why it is part of an assessmentprotocol. For example the first sentence in the Delirium RAP defines delirium. Delirium(acute confusional state) is a common indicator or nonspecific symptom of a variety ofacute treatable illnesses. The Problem part of the RAP also goes on to describe itscharacteristics and provides guidance on how to treat it successfully.

The Trigger part is simply the list of those specific answers to MDS items thattrigger the initiation of the RAP. The MDS is a preliminary screening instrument andif certain items are checked, then additional action is required of nursing home staff. Forexample, Section B is concerned with memory, cognitive skills and delirium and has onequestion on delirium with six sub questions in it If any of six subquestions are answeredwith a 2, meaning a new onset or worsening of an existing condition, then a DeliriumRAP is said to be triggered. The specific MDS items used to initiate follow-up actionare the triggers. In this Delirium example, an answer of 2 to one of items B5a, B5b,B5c, B5d, B5e, B5f, or B6 would trigger the RAP.


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The third part of the RAP, the Guidelines, is the most extensive. This Guidelinessection covers the signs and symptoms used in a diagnosis and factors affecting thediagnosis such as medications, psychosocial history and present situation, moods, vision,dental, and other health conditions of the resident. For example, one of the Deliriumguidelines is to check medications.

Why Should CMS Create a 19th

RAP?

Section Q is one of the few sections in the MDS manual whose answers are notused in a RAP. This is out of keeping with the intent of the MDS assessment process.Filling out the MDS is only the first step in the assessment model. As described inChapter One of the User Manual, all good problem identification models have similarsteps.24 The first step is filling out the MDS, the second is the use of a decision makingRAP followed by the development of a care plan, its implementation and then anevaluation of its results. The current treatment of discharge planning in the MDSabruptly truncates at the first step since there is currently no expectation for action or

accountability for Section Q.

The creation of a 19th

RAP, triggered by the residents preference for servicesoutside the nursing home, is seen as a way of exploring discharge-related action on behalfof the interested resident. Such a RAP would emphasize the importance of dischargeplanning and provide the follow-up now missing in Section Q procedures. In a RAP ofthis nature, the role of the nursing home would be to support the residents preference.The absence of follow-up is seen as a weakness undermining the intent of Section Q,taking no action to support the residents preference, and is inconsistent with CFR andstate licensing requirements for discharge planning.

In 1989, the Health Care Financing Administration (HCFA) funded the NursingHome Case Mix and Quality (NHCMQ) demonstration to design and test a case mix-adjusted prospective payment system for Medicare and Medicaid. The MDS wasdeveloped under contract with the federal Medicaid program by researchers at theResearch Triangle Institute, Brown University, the University of Michigan, and theHebrew Rehabilitation Center for the Aged. One person who is familiar with these earlyefforts said that planning at the time envisioned two additional RAPs: one for painmanagement and the other for discharges, but that the two were never developed.25

Creating a RAP

On the one hand, it is difficult to create a RAP since it means drafting guidelines,getting them reviewed, and having a serious look at what constitutes good dischargeplanning. On the other hand, staff who attended the March 2007 New Freedom Initiativepoint to the remarks of CMS Acting Administrator Leslie V. Norwalk26 and their

24 Centers for Medicare and Medicaid Services. (2007, March), p. 1-125 Personal communication with Kathy Wade of Myers and Stauffer, March 14, 2007.26 Norwalk, L. (2007, March). Seehttp://www.cms.hhs.gov/apps/media/press/speech.asp?Counter=2084&intNumPerPage=10&checkDate=&checkKey=&srchType=&numDays=3500&srchOpt=0&srchData=&keywordType=All&chkNewsType=11&intPage=&showAll=&pYear=&year=&desc=&cboOrder=date


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continuing strong support for rebalancing long-term care, helping persons exercise theirchoice of long-term care, and building community programs. Adding a 19th RAP is seenas significant action that CMS can take to move the New Freedom Initiative. Changingthe manuals instructions is easier and important to do but it is as not as significant anaction as adding a RAP.

A RAP would not necessarily have to reiterate all acceptable discharge protocolsbut could further explore resident preference for discharge and resident perceptions abouttheir own service needs. The work done in California on resident preference has beenoffered in whole or in part as the basis for a RAP. 27 The California Pathways preferenceinterview takes from fifteen to twenty minutes to administer and document responses.28The assessment interview tool is attached in Appendix B of this report.

A RAP of this type would further assess preference to transition (stablepreference), assess the residents own perception about service need (feasibility), offersome minimal and generic information about services available in the community setting,

and gather the residents interest in further discussing discharge options and getpermission to forward their name to a community-based referral agency for additionalcare planning and discharge planning.

Changing the MDS 2.0 User Manual

The current MDS 2.0 user manual describes for each section the intent, definition,process, and coding of the items in the section as well as examples of their use. Thecurrent Intent of Section Q reads:

To identify residents who are potential candidates for discharge within the nextthree months. Some residents will meet the potential discharge profile atadmission; others will move into this status as they continue to improve duringthe first few months of residency.

The Process text contains the following main paragraph:

For new and recent admissions, ask the resident directly. The longer the residentlives at the facility, the tougher it is to ask about preferences to return to thecommunity. After one year of residency, many persons feel settled into the newlifestyle at the facility. Creating unrealistic expectations for a resident can becruel. Use careful judgment. Listen to what the resident brings up (e.g., Calls outI want to go home) Ask indirect questions that will give you better feel for theresidents preferences. For example, say Its been about 1 year that weve knowneach other. How are things going for you here at (facility)?

The text of the federal instruction is important because it is used as a guide forstate instructions and subsequent federal language. For example, Maines Training

27 California Pathways, Real Choice Systems Change Grant Preference Assessment Tool, (2005).28 Ibid.


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Material for using the MDS repeats exactly the MDS 2.0 manual language. 29 MissourisMDS manual repeats the MDS language but adds some direction regarding additionaldischarge assessments.

1. a. Ask resident of plans directly if new admission. The longer a resident lives in afacility, the harder it is to ask about preferences. Use careful judgment here to avoidunrealistic expectations. This section provides data on discharge potential. Depending onresidents clinical status and circumstances, additional assessments to determine why theresident is not a candidate for discharge at this time and what care plan can beimplemented to improve discharge potential may be warranted.30

The manual used with the Staff Time and Resource Intensity Verification(STRIVE) study changes the description of the Intent to read To identify residents whoare potential candidates for discharge to the community. This change eliminates thefocus on 90 days and shorter stays. The next change the STRIVE manual contains ismaking the following sentence the first sentence in the Process comments: The facilitysocial worker should ask the resident these questions if the resident is able to respond.

The last change in the STRIVE manual is to end with Process comments: If the residentcannot answer, contact the residents family, significant others, or a legal guardian toanswer on the residents behalf questions XQ1a through XQ1e.

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Specific suggestions for improving the User Manual instructions include:

The tone and language need to be rewritten to place a more positive emphasis ondischarge. The current language treats any mention of discharge as the raising ofunrealistic expectation.

Residents should be asked directly. The indirect questioning is not in keeping

with the CMS emphasis on direct questions of the resident that is shown in thedevelopment work on the MDS 3.0.

The manual and training protocols should instruct staff to take action to assist theresident to contact community resources as soon as a resident indicates apreference to return to the community.

In the case of residents for whom a Q1a yes response is recorded but the Q1cindicates no plan to discharge, the MDS administrator should be required tocontact the Ombudsmen or another state or county agency to ensure appropriateadvocacy organizations have the referral.

The manual should instruct MDS managers to work with communityorganizations, like local Independent Living Councils and Area Agencies on

Aging, to develop a referral protocol for residents who indicate a preference toreturn to the community.

The manual could instruct the nursing home worker to obtain the residentspermission to release their name to an agency that would provide additionalinformation about home and community services.

29 The Maine Department of Health and Human Services, Bureau of Medical Services, (2004, July) p. 9330

Statewide Planning Committee for Improving MDS Assessment and Use, (2006, August). P. 3231 Iowa Foundation for Medical Care, (2006) p. 40


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A belief that the MDS language is inconsistent with the New Freedom Initiative is

shared by National Council on Disability which wrote in its 2003 Olmstead report:32

This instrument [the MDS] is far too limited to serve as an accurate assessment

of nursing facility residents potential to return to the community. It conditionsdischarge on expressed preference to return to the community and on theattitudes of the persons family and friends, and it suggests that long-term facilityresidents are less appropriate for discharge than others. This section of theinstrument is inconsistent with Olmsteadand should be revised to eliminate thatinconsistency.

Changing the user manual would be a substantial improvement to the MDS.

Changing the Wording of Existing Section Q items in the MDS

Improvements to Item Q1a

There is substantial discontent with the wording of Section Q. Discussions aboutimprovements to Q1a focus on who is answering the item, who is asking the item, andwhat is done with the information. The current wording has unreliable results in partbecause Q1a is not a question. The MDS 2.0 instructions do not require the asker toactually ask the nursing home resident directly. Rather, item Q1a is a checkmark that thenursing home worker is supposed to fill out.

Indianas Nursing Facility Transition Manual takes into account that other peoplecould be expressing a preference, rather than the residents preference, and describes the

use of Section Q as follows:

The response to Section Q during an MDS survey may be the response of theresident. The response may reflect the desires of the nursing facility or familymembers more closely than the desire of the resident. For this reason, Section Q isnot to be considered as the sole indicator for transition interest, but rather as astarting place for the transition team in their transition candidate identification.33

A nursing home social services employee will most likely fill out Section Q.State program staff tend to perceive social workers in nursing homes as having highturnover, working in an organizational atmosphere that does not encourage aggressive

discharge planning, and lacking information about community resources and how tomake effective pre-transition case planning.

Per federal regulations, only facilities with more than 120 beds are required toemploy a qualified social worker on a full time basis.34 The CMS Online Survey,Certification and Reporting database for December 2006 shows there were 15,885

32 National Council on Disability, (2003, September 29), p. 18333 Family and Social Services Administration, (2007, January 15) p. 20.34 42 CFR 483.15 (g)(2)


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nursing facilities with 1,719,114 beds for an average nursing home size of 108 beds.35The 2004 National Nursing Home Survey showed that 51.2% of facilities had fewer than100 beds.

36Thus the average-sized nursing facility in the United States is not required to

have a social worker on staff. Many facilities employ social services representativeswith little or no formal training.

These staff weaknesses are seen as compounding any problems that may existwith the wording of Section Q items. For example, preliminary findings in Californiainvestigating resident preference reveal 46% inconsistencies between the response to Q1aand resident responses to direct interview questions to the resident about dischargepotential.37

Improvements to Item Q1b

Item Q1b asks if the resident has a support person who is positive towardsdischarge. As currently worded, this item could be eliminated since it does not provide

useful information. You can transition persons even if they do not have a support personand a no answer to the question might provide an excuse to the nursing home for nothelping the person with transition assistance.

When discussed, persons usually say the question is vague. What if the answer isyes, what does that tell you? For example, what about the daughter who is positivetowards discharge but lives 400 miles away? Alternative wording can better identifywhat kind of support the person can provide. For example, Resident has a supportperson who can help with discharge planning, or, Resident has a support person whowill provide care after discharge.

Another alternative wording might be to instruct the nursing home worker tocollect the name and address of someone who can be contacted about the resident. Forexample, if Q1b is answered yes, then the name and contact information could be writtenon the MDS under the question. By keeping the contact information in the MDS, staffworking with the resident would know where to look for it. The utility of this change isthe more rapid identification of the residents informal supports as they are often essentialto care planning.

Improvements to Item Q1c

Interviews with state staff show it is not entirely clear what Item Q1c is used for.38

Descriptions of transition programs do not mention or report on the use of answers to

35 OSCAR data is available from the Health Services Research and Evaluation group of the AmericanHealth Care Association. See http://www.ahca.org/research/index.html36 See http://0-www.cdc.gov.mill1.sjlibrary.org/nchs/about/major/nnhsd/nnhschart.htm, accessed May 29,2007.37 Nishita, C. et. al., (2005, November).38In fact, it has been excluded from analyses of discharge planning because of perceived limited utility.See Division of Health Care Policy and Research University of Colorado at Denver and Health SciencesCenter (2006, September), p. 5.


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Q1c.39 None of the 18 RAPS use Q1c as a trigger or guideline. How useful is theinformation if the large majority of persons leave the home before 90 days? There is anew six-month stay requirement in the Deficit Reduction Act (DRA) Money Follows thePerson Demonstration Grant language. Adding answers to the items that capture thepossibility of longer than a 90-day stay--e.g. 90-120 day stay, 120-180 day stay, and more

than 180 day stay--would make this item more useful to states current activities.

Adding a Fourth Item to Section Q

A fourth item could be added to strengthen discharge planning follow-up sincedischarge planning and care management are complicated and three items may not besufficient.

Given the less than desirable reliability scores of items tested in STRIVE, in 2007CMS staff considered testing an alternative wording for the current MDS 2.0 Q1a item.This alternative wording changed item Q1a to read "May we provide your name to an

agency that can assist you in learning about possible options for returning to thecommunity." The CMS suggestion above "May we provide your name, is apossible fourth item--a direct question that deals with the release of name issue andencourages the follow-up and communication necessary in discharge planning.

The question of obtaining permission from the resident has also been discussed instates where the Medicaid agency is reluctant to release personally identifiableinformation like the names of persons who answered yes to Q1a of the MDS. Onepossible solution that has been mentioned is to get the permission of the person to releasetheir name. In practice, some state Medicaid agencies now release the names of Medicaidresidents to contractors who perform administrative work for the state. Such contractors

are considered agents of the state for the purpose of administering the Medicaid programand are obligated to protect the privacy of the Medicaid recipient. Other state Medicaidagencies have cited HIPAA concerns as reasons for not releasing names to thecontractors performing nursing facility transition work for the state.40

Adding Section Q to the Quarterly Assessment Form

CMS has created a multiple forms to collect MDS information. Currently,Section Q is part of the full initial assessment but is not asked on the quarterlyassessment. If there is no significant change of condition (which triggers a full

assessment), Section Q is not asked about until the next annual assessment after aresident is admitted. Advocates believe that discharge planning would be strengthened ifitems related to it were placed on the quarterly assessment. This would have a positiveimpact on quality of care because persons would not be unnecessarily institutionalized.Omitting discharge questions from the quarterly assessment implies that discharge

39 For example, Ribar, M. & OKeeffe J., (2005, June).40 Reinhard S. & Hendrickson L. (June 2006) in their study of nursing facility transition projects found thatComments about release of information concerns were made by state staff and persons in non-profitagencies in four states (p. 12).


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planning is a secondary or less important activity that nursing home staffs dont reallyneed to stress.

Conclusions

There is a window of opportunity to change the MDS before the next version,MDS 3.0, is finalized. Not changing the MDS during this window will perpetuate a lackof emphasis on discharge planning, continue a long standing institutional bias indischarge planning, and be at cross purposes with current CMS policy. Dischargeplanning needs to be recognized as an important component of quality of care in nursinghomes. Efforts to improve it encompass changing the MDS to better support the stateand nursing home staffs that help residents exercise their choice of long-term careservices.41 As currently designed and administered, Section Q is not supportive of thechoice, dignity, and independence of nursing home residents. Targeted changes to thissection, changes in the instruction manual, quarterly assessment of discharge preferences,and creation of a 19th RAP are specific ways that public policy can better support

consumers desires to make informed choices about where they receive long-termservices and supports.

Acknowledgments

We wish to express gratitude to the following people for their contributions to thisdocument: Melissa Hulbert and her colleagues of the Centers for Medicare & MedicaidServices and CMS grantees who participated in telephone and face-to-face meetings onthis issue. We are also grateful to Paula Acosta, Jennifer Farnham, Mary James, RosalieKane, and Rhonda Workman who reviewed earlier versions of this draft and provided

substantive comments that have strengthened this discussion paper.

41 See the Medicare Payment Advisory Commission report. Division of Health Care Policy and ResearchUniversity of Colorado at Denver and Health Sciences Center (2006, September), p. 14.


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Appendix A: Preference Items in MDS version 3.0 and STRIVE

The Discharge Item in the July 2006 Draft of MDS 3.0

CMS has been working on the next version of the Minimum Data Set MDS 3.0.Although an implementation date for MDS 3.0 has not been set, The CMS websitecurrently says it is committed to completing the national evaluation by the end of 2007. 42Section F (Preferences for Customary Routine, Activities, Community Setting) of theJuly 2006 draft version of the MDS 3.0 contained item F5, which is required to becompleted only at admission. As shown below, the question is Do you want to talk tosomeone about the possibility of returning to the Community? No follow-up on a yes orno answer is required.

42 Centers for Medicare & Medicaid Services, (2007, July), DRAFT MINIMUM DATA SET, Version 3.0(MDS 3.0) FOR NURSING HOME RESIDENT ASSESSMENT AND CARE SCREENING, retrieved onMarch 19, 2007 from http://www.cms.hhs.gov/NursingHomeQualityInits/downloads/MDS30Draft.pdf


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In contrast to the existing four questions used in MDS 2.0, the July 2006 draftMDS 3.0 has only this single question. A possible reason for the elimination of three ofthe four discharge questions is the statement in the explanatory material for the July 2006draft MDS that To the extent possible, items that did not address screening for clinicalsymptoms and syndromes were eliminated. We have, however, retained items that

currently form the basis for payment and quality measurement.

43

The Discharge Items used in the STRIVE Study

However, CMS has also been testing additional discharge related items in its StaffTime and Resource Intensity Verification (STRIVE) study. The study is in progress in thestates of Iowa and Kentucky. Studies in New York, Ohio, South Dakota and Texas arescheduled to begin in the early fall of 2007. Potential MDS items are being tested in 240facilities in 15 states.

The STRIVE questions are shown below.

43 Centers for Medicare & Medicaid Services, (2007, July), DRAFT MINIMUM DATA SET, Version 3.0(MDS 3.0) FOR NURSING HOME RESIDENT ASSESSMENT AND CARE SCREENING, p. i,retrieved on March 10, 2007 from http://www.cms.hhs.gov/NursingHomeQualityInits


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Appendix B: California Follow-up to Resident Preference Answers

SECTION XQ: DISCHARGE POTENTIALAND INTEREST

RESIDENT DISCHARGEINTERVIEW (This section should be completed by a social worker )

Ask the resident (or responsible other, if needed).

a. Would you like to learn about possible options for

returning to live in the community, and if housing,

services, and supports are available?

Code: 0. No 1. Yes

b. Do you have a place to live in the community?

Code 0. No (skip to XQ1d)

1. Yes (indicate all that apply, XQ1c)

c.Indicateall thatapply

Code: 0. No 1. Yes

1. Own Home

2. Home of relative or friend

d. Where would you prefer to live in the community if

housing and supports are available? (indicate all that

apply)

Code: 0. No 1. Yes

1. Own Home

2. Home of relative or friend

3. Assisted living

4. Board and Care (group home)

5. Other

e. Can we provide your name to an agency that can

assist with giving you information about returning to the

community (either the Aging and Disability Resource

Centers (ADRC) or the Area Administration on Aging (AoA)

Code: 0. No 1. Yes


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INTERVIEWER NOTE: The purpose of this interview is to determine an individualspreference for leaving the nursing home and to begin to identify services that might be needed tolive in the community. However, many nursing home residents are not aware of livingalternatives or the services that may be available to assist individuals living in the community.Thus, it is essential to ensure that individuals who respond that they do not want to leave the

nursing home are fully informed when making this decision. In this regard, the questions that listservices that people might need (questions 3-22) are not used to screen people from furtherconsideration for relocation but to educate them about services that might be available.

MFP Preference Interview Data Collection Tool

Short Version 1-6-05

Subject ID #: Date: / /

Interviewer ID #: Start Time:

Hi Im (INSERT YOUR NAME)from the University of California, Los

Angeles. I am interviewing MediCal nursing home residents here at the(NAME OF NURSING HOME) as part of a study paid for by the California State Department of

Health and Rehabilitation. This project involves helping people who live in nursing homes move

into the community to live in other places, which can range from an assisted living facility or a

group housing arrangement to homes or apartments using the same money that is spent for

nursing home care. Id like to ask you some questions about alternatives to living in a nursing

home and where you (your relative) might want to live. We are asking all MediCal nursing home

residents or their family at this facility these same questions. We do not know who might be able

to move out of the nursing home, and we cannot promise that you (your relative) would be moved

out of the nursing home. We dont want to create false hope about moving. But there are other

choices for where a person might live with the proper resources and supports. This interview will

take 10 minutes. Is now a good time and can I ask you some questions?

NO, STOP

INTERVIEW

YES, CONTINUE

1. Would you (your relative) want to live somewhere other than the nursing home?

______ NO (Go to Q1a & 1b) ______Dont know (Go to Q1b) ______YES

(Go to Q2)

1a. What are some reasons you (your relative) want to

continue living in the nursing home? (LIST)

1.

2.

3.

4.


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1b. There are options for living outside the nursing home.

You could live in your own home or apartment with help;

you could live in an assisted living facility or you couldlive in a group home with 3 to 6 other people and share

services and help. Would any of these options/choices

make you change your mind about leave the nursing

home?

NO, (Go to Q1c)

YES, (Go to Q2)

1c. I am going to list some services that you might be able

to get. Listen to them and tell me if you need them. Later

Im going to ask if getting these services would change

your mind about leaving the nursing home. (Go to Q3)

2. Where would you live and with whom?

_____Apartment or home alone

_____Apartment or home with family

_____Apartment or home with spouse or partner

_____Assisted living facility

_____Group home

_____No place to go

a. _____Are you willing to live in a group home with 3 to 6 other

people?

b. _____Are you willing to live in an assisted living facility?

Now Im going to list the services that might help you live outside the

nursing home. Listen to them and tell me if you need the service.

3. Help getting out of bed and into a chair?

NO,

YES,

4. Help getting started to eat? For example, cutting up your food, or getting your

silverware at meal times?


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NO,

YES,

5. Help eating? For example, someone to feed you?

NO,

YES,

6. Help turning or moving in bed?

NO,

YES,

7. Help getting to the toilet?

NO,

YES,

______ Wears adult briefs or pads

a. Help changing your adult brief or pad?

NO,

YES,

8. About how many times during the day do you think you need help getting to the toilet

OR changing your adult brief/pad? _______

9. Help with morning care like brushing your teeth, washing your face, brushing your hair,

or putting on your deodorant?

NO,

YES,

10.Help with bathing or taking a shower?

NO,

YES,

11.Help walking inside?

NO,

YES,

12.Help walking outside?

NO,

YES,

13.What kind of help do you need?

_____Cane

_____Walker

_____Safety rails on walls

_____Wheelchair


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a. If Wheelchair, do you need help getting around in your wheelchair

inside?

NO,

YES,

b. If Wheelchair, do you need help getting around in your wheelchair

outside?

NO,

YES,

14.Help getting dressed in the morning?

NO,

YES,

a. If YES, what do you need help with

_____Shoes/socks

_____Shirt/dress

_____Pants

15.Help getting undressed at night?

NO,

YES,


_____Shoes/socks

_____Shirt/dress

_____Pants

16.Help using the telephone?

NO,

YES,

a. YES, Do you need

______Volume increased, cant hear

______Large numbers, cant see to dial

______Dialing assistance, cant dial

17.Help cooking or preparing your meals?

NO,

YES,

18.Help with medications?

NO,

YES,


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19.Help with housework?

NO,

YES,


______Laundry

______Washing dishes

______Cleaning house

20.Help shopping?

NO,

YES,

21.Help with transportation?

NO,

YES,

22.Help managing your money or finances?

NO,

YES,

a. If YES, do you need help with

______Paying your bills

______Balancing your check book

______Tracking your bank accounts

23. If resident/proxy responded NO to initial preference to leave nursing home, If you

had help available for any of these services, would you change your mind about leaving

the nursing home?

NO, STOP INTERVIEW

YES,

a. If YES, Where would you live and with whom?

_____Apartment or home alone

_____Apartment or home with family

_____Apartment or home with spouse or partner

_____Assisted living facility

_____Group home

_____No place to go

b. _____ Are you willing to live in a group home with 3 to 6 otherpeople?

c. _____ Are you willing to live in an assisted living facility?


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Thank you so much for taking the time to answer these questions. We want to be sure youunderstand that answering these questions does NOT mean that you will be relocated out ofthe nursing home. We dont want to create false hope about moving. We are only gettinginformation on nursing home residents who would prefer to live some place other than thenursing home.OFFER FOLLOW UP WITH OMBUDSMAN INTERVIEW, INDEPENDENT LIVING

CENTER, AND/OR RESEARCHER.

STOP INTERVIEW, GET HIPAA CONSENT SIGNED (TELL FAMILY

MEMBERS THIS WILL BE MAILED TO THEM)

24. How clear is the person in terms of what services are needed?

1-Not at all clear

2-Somewhat clear

3-Neither clear nor unclear

4-Somewhat clear

5-Very clear

25. How motivated is the person to relocate?

1-Not at all motivated

2-Somewhat unmotivated

3-Neither motivated nor unmotivated

4-Somewhat motivated

5-Very motivated

End Time:


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Nishita, C., et. al. (2005, November). California Pathways, CMS Real Choice SystemsChange Grant #11-p-02077/9-01. Presented to annual meeting of Gerontological Societyof America, Orlando, Florida,

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